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Thursday, December 15, 2011

"There's been some growth."

This is not a sentence I ever wanted to hear from Kol's oncologist. However, it's exactly what we heard when he called Wednesday to ask us to come in to see him on Thursday. If it's good news, the oncologist will just tell us on the phone. When it's bad, we get asked to come in person.

"There's been some growth."

It's not at all what we expected to hear. Kolbjorn has gained some much needed weight, has grown taller (which was not a given, since a possible side effect on the radiation was pituitary damage and hormone regulation), his hair is back (darker, but just as curly as before), he has lots of energy, and we learned on Tuesday that he is not developing cataracts yet (which we were told is a given as a result of the radiation). So far, there are only subtle signs of cognitive issues. We are constantly watching Kol for signs of relapse, and we haven't noticed any signs or symptoms of tumour growth - no co-ordination problems, headaches, unusual vomiting (although Kol was sensitive to a new supplement he recently started getting) or slurred speech. Kol has come through all of the treatment with flying colours.

"There's been some growth."

We feel blind-sided. Our hearts are broken, tears are close to the surface. The original tumour has started growing again. It is noticeably larger on the MRI images we saw. The possible, "tiny spot" that the radiologist "might" have seen in September has also grown. We don't want to do this again. I feel weak, overwhelmed. Scared. Lost.

"There's been some growth."

There is no standard protocol at this point - the only "proven" treatment is the chemo that Kol has already been through, and the oncologist says that the tumour that is left is resistant to that treatment. There is no effective treatment that the Cancer Agency can offer Kolbjorn at all. Nothing proven, all experimental, nothing that has been proven to be even as effective as the treatment Kol has already had.

The oncologist did give us options for a different chemo treatment, either a cocktail of two chemo drugs, or being part of a study that would possibly add a third drug to the mix - in either case, 12 treatment cycles, each cycle lasting a month. One of the drugs is administered intravenously, and would require Kol to be admitted to hospital for a minimum of five days each cycle during treatment. There is no data as to how effective it would be for Kol's condition. In addition to the typical chemo side effects (weakness, low appetite, nausea, vomiting, low blood counts, hair loss) one of these drugs causes severe diarrhea, and another one would put Kol at risk for bleeding. If he were on that drug, he would not be eligible for surgery of any kind until a period of time after discontinuing it.

Surgery may be an option - the oncologist hasn't consulted Kol's neurosurgeon yet - however the tumour is apparently near a brain structure that contains a bundle of nerves that control movement, which could make it tricky. The doctor didn't really seem to be too hopeful about the possibility.

"There's been some growth."

This leaves us with few choices, and yet lots of choices. Because there is no proven effective cure, we can not be considered negligent for choosing alternative treatments, or even for choosing to do nothing at all. I've done tons of reading and research in the last 18 + months, and there are some encouraging alternative treatments that wouldn't impact Kol's quality of life so drastically.

We are taking some time to gather more information and to pray. We do know, however that we don't have too long to make our decision, as this tumour is growing quickly, and the more growth, the harder it will be to treat.

"There's been some growth."

Throughout the last 18 months, we as a family have grown in many ways. And, with this new tumour growth, I expect more growth. It's just so painful. I am so proud of our kids - of the way they pulled together to support each other when we told them about what the doctor said.

We know that God is the great healer. He has Kol in his hands, and I know that He is capable of healing our precious son. Please pray for direction for us; for guidance in making the decisions we have to make, and for peace for us - especially for Kolbjorn and the girls.

It's been a long time since I've thought about the old hymn - the one that kept popping into my head when Kol was first diagnosed, but I've been hearing it again throughout the last 24 hours.

To God be the glory, great things he hath done!So loved he the world that he gave us his Son,who yielded his life an atonement for sin,and opened the lifegate that all may go in.

Praise the Lord, praise the Lord, let the earth hear his voice! Praise the Lord, praise the Lord, let the people rejoice! O come to the Father thru Jesus the Son, and give him the glory, great things he hath done!

O perfect redemption, the purchase of blood,to every believer the promise of God;the vilest offender who truly believes,that moment from Jesus a pardon receives. (refrain)

Great things he hath taught us, great things he hath done,and great our rejoicing thru Jesus the Son;but purer, and higher, and greater will beour wonder, our transport, when Jesus we see. (refrain)

Above all, please also pray fervently for Kol's complete recovery. The God of the Bible, God of Abraham and Isaac, who created the world, who has conquered evil and who sent Jesus to be our saviour, is infinitely capable of healing a little boy. We give God the glory for Kol's health and survival to this point. We give Him the glory for healing our son, and for the work He continues to do in our lives. Pray that God uses our pain and struggle to reach others. It's painful for us, but I think it would be even more painful if I knew that all of our pain had no purpose - that nothing good would come from our hurt. I want to believe - maybe even need to believe - that our pain now is small in comparison to an eternity without God.

16 comments:

As difficult as it must have been to write this, we are all so appreciative that you take time to inform us of Kol's journey. We offer what we can, our prayers and support to your family. You have shown an unwavering faith and we must believe that God has a plan for Kol and your family. Know that you are loved and thought of by so many people!!

Kirk and Kristen, I have tears flowing as I read this. You will be constantly in our prayers as will Kol and the girls. I wish there was something I could do, but know we are here for you for anything you need. I pray for wisdom on what you should do next, if anything. I have no more words, but know you are loved. By us and even more by our God in Heaven who is so able.

Our hearts are so heavy thinking about what you have gone through and what you have to go through now. Our thoughts and prayers are with you and we also cling to the knowledge that God is the great healer.Tony and Betty

Kol and all of you are held in my prayers, too. I praise God for His love and presence in the darkness of sad and hard times in life, and that I hear you are leaning on the faith He gives. Emmanuel, "God with us" be the gift we look for this Christmas, even as we pray fervently for the healing of His precious child.

Hey, Kol This is Matthew J. I just wanted to check in with you and see how you're doing. I'm looking forward to visiting you in the spring or summer if we can go to Saskatchewan. I hope you feel better fast. I'll give you a call maybe tomorrow.

P,S Wondering how your library is doing. I can't wait to see it. When I call you can you tell me some of books you got in your library? bye.